Megan M. Campbell, Jantina de Vries, Sibonile G. Mqulwana, Michael M. Mndini, Odwa A. Ntola, Deborah Jonker, Megan Malan, Adele Pretorius, Zukiswa Zingela, Stephanus Van Wyk, Dan J. Stein & Ezra Susser
BMC Medical Ethics 19 (1):72 (2018)
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Abstract |
Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during this consent process? 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape, and older participants, were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness nor education were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies.
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DOI | 10.1186/s12910-018-0313-2 |
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References found in this work BETA
Ethical Issues in Human Genomics Research in Developing Countries.Jantina de Vries, Susan J. Bull, Ogobara Doumbo, Muntaser Ibrahim, Odile Mercereau-Puijalon, Dominic Kwiatkowski & Michael Parker - 2011 - BMC Medical Ethics 12 (1):5.
The Quality of Informed Consent: Mapping the Landscape. A Review of Empirical Data From Developing and Developed Countries.Amulya Mandava, Christine Pace, Benjamin Campbell, Ezekiel Emanuel & Christine Grady - 2012 - Journal of Medical Ethics 38 (6):356-365.
Voluntary Participation and Comprehension of Informed Consent in a Genetic Epidemiological Study of Breast Cancer in Nigeria.Patricia A. Marshall, Clement A. Adebamowo, Adebowale A. Adeyemo, Temidayo O. Ogundiran, Teri Strenski, Jie Zhou & Charles N. Rotimi - 2014 - BMC Medical Ethics 15 (1):38.
A Perpetual Source of DNA or Something Really Different: Ethical Issues in the Creation of Cell Lines for African Genomics Research.Jantina de Vries, Akin Abayomi, James Brandful, Katherine Littler, Ebony Madden, Patricia Marshall, Odile Ouwe Oukem-Boyer & Janet Seeley - 2014 - BMC Medical Ethics 15 (1):60.
Participants' Perceptions of Research Benefits in an African Genetic Epidemiology Study.John Appiah-Poku, Sam Newton & Nancy Kass - 2011 - Developing World Bioethics 11 (3):128-135.
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Citations of this work BETA
Education Versus Screening: The Use of Capacity to Consent Tools in Psychiatric Genomics.Camillia Kong, Mehret Efrem & Megan Campbell - 2020 - Journal of Medical Ethics 46 (2):137-143.
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